A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, October 12, 2013

A Rainbow of Colors

Everyday I wear a rainbow of colors on my arm.  Ok, so it isn't a true rainbow.

From left to right:

1. Coming together for Kaitlin. This honors a young woman who lives near me who had Batten's Disease. (Purple)

2. Road to Discovery. This is Notre Dame Dean Greg Crawford's yearly bike ride to raise funds for research into NPC. (Dark blue)

3. Persevere For Life. This is the new NNPDF wristband that I wear in memory of my son Dan. (Periwinkle)

4. Gavin's Cause. I wear this in memory of Gavin Lopez who lost his battle with NPC about 2 weeks before Dan. At the time Gavin's mom had a blog that I constantly read and I could see Dan's decline at the same time. (Green)

5. Wylder Nation. This is in memory of Wylder James Laffoon who lost his battle to NPA in 2012. Wylder's mom Shannon has written a few kids books. We were the first Niemann Pick family Shannon met and we were honored to spend time with her in Nantucket last December. (Very light blue with red logo).

6. Embrace Life. This is in memory of Trek Atlas Ingram who lost his battle with NPA in Thailand in 2012 while embracing life with his family. Trek's mom blogs about their family adventures and his dad wrote a few books. (Light blue)


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